Garys reflux at 25sep; info on oesoph stretching pls.

[Garysreflux]

Heres an update of where i am .. any comments/advice appreciated. Summary of meeting with consultant on 15sep; my oesoph narrowing serious ( 8mm); narrowing due to scarring; they remain uncertain that in scarring there is a tumor (biopsies so far show no C but still not certain no C exists); due to narrowing food backs up resulting in oesoph dilating and oesoph has become funnel shaped; concerned re. weight loss; poss candidate for Ivor Lewis op to remove any C risk; case to be reviewed to determine next course of action.

I came away thinking; Ivor Lewis; if ive got C then bring it on but for an active/fit 59yr old i had the impression (i dont know for sure mind you and any info useful ) that the scale of op meant for me it was a massive life changer but hey ho. Furthermore, disappointed to know that despite IL op you finish up taking PPIs for life.

Also troubling me was the attention re. my weight loss. Ive intentionally (well at least i think intentionally) lost 4st over last 2 yrs. Ive got a good diet both in terms of amount and quality of food. I felt the weight loss was my doing (diet and rigorous gym sessions x3/wk) and not due to C (apart from swallowing im fit and well). So i didI a weight test. At hosp 5sep (thurs) i was 13st 10lbs. Starting next day Friday i came off current diet and are full fat milk, bread, pasta, cakes/chocolate etc and eating late. I went back to hosp on weds (thats 5 days eating for england) and got weighed (same scales/clothes), just under 14st6lb. 10lb gain; over the moon.

I was pleased re weight gain and concerned about ivor lewis op. I went to my GP. Nothing got resolved but talking to someone more knowledgible definitely helped put me in a better place.

On 22sep a specialist rang. They cant rule C out and want to do further tests. I mentioned weight gain (thinking its the game changer) but the response was; weight gain is a good sign but if theres onset of a growth in stricture/scarring i may have gained slightly more. They want a clearer idea of the composition of the scarring to confirm what they are treating and i cant argue with that. Plan is that before any ivor lewis op scheduled they try to stretch my oesoph from 8 to 15mm over 3 endoscopy sessions. They will also do further C tests as part of those sessions. I await my first stretching appointment and any community info/experience on oesoph stretching wld b appreciated.

A follow up letter from consultant stated in summary .. .patient may have benign oesoph stricture from prev reflux but unusual to have this degree of oesoph dilation. May have alchalasia with benign stricture but a small proportion of patients wiv alchalasia develop oesoph cancer and cant be certain this not the case.

Im thankful for their persistance. As an aside .. Steve Hewlett a BBC radio 4 presenter (Media show) has got oesoph C. He talks about its discovery/treatment on the Eddie Mair bbc radio 4 show (aired abt 1wk ago) avail on iPlayer. Worth a listen .. sounds as if like me he had digestion issues and delayed seeking med advice. (I still kick myself).

[AoifeMcC]

Stay persistent but do wait for more tests. I was 32 when I was diagnosed with this cancer 10 years ago.

[brucemillar]

Hi

I was 57 fit & healthy when I was diagnosed with OC. It has no respect for health. Sounds like you are in good hands. Let them do all their tests and get the results.

I had a transchiatal oesophagectomy, not IL. It is life changing at the time but I am now almost back to normal.

Good luck.

[Joseph84]

I was 45 when I had IL that was 23 years ago.

[strangetimes in reply to Joseph84]

I'd echo brucemillar .sounds like you're in good hands .

I too had a trans whatever ( roof top scars ) as opposed to Ivor Lewis ( shark bite ) .I think what they do inside is the same ,just different means of access .

Everyone is different but I've recovered well ,some digestion issues but I'd put them on a par with bad IBS .Manageable if you have will power to watch what and when you eat. Which i don't ! So I suffer sometimes ,but sure it's avoidable .

Good luck and let us know how it goes .

[chris_usa]

Strictures (narrowing due to scarring) in the esophagus can be stretched, although it usually does have to be done repetitively for best outcome. It seems your swallowing is adequate, as you were able to eat a full diet. The esophagus widens when food backs up, but then narrows again over time after successful treatment.

I tend to agree with you that esophagectomy should be saved for cancer of benign disease of the esophagus that has gone past any other treatment and causes malnutrition. If cancer present or possibly present, go all-in with Ivor-Lewis. If due to strictures, I would certainly try other treatments first (endoscopic bougie dilation, balloon dilation). You can't undo an esophagectomy. \wc

[Heatmp]

I had a full Ivor Lewis 6 months ago and I am healing well, been on holiday and back at work after 3 months on phased return. I was a 49 year old relatively healthy women who suffered from constant reflux. Went in for corrective surgery, during which a tumour was found. All tests indicated no cancer however no one could be certain until it was removed and tested. The only option I had was IL, turned out it was benign. Wasn't w orth the risk not to have it removed. The op is life changing but not life restricting or limiting if you follow the advice given. The question you have to ask is, What if it is Cancer and I do nothing?.

You will do what is right for you. Good luck.

[Hidden]

This period when you do not have a definite diagnosis is an anxious time. I suppose the first priority is to establish whether you do have cancer, or not and they will probably do a series of scans and biopsies to establish this.

Do you suffer from Barrett's oesophagus? If so, having high grade dysplasia would require treatment (possibly radio frequency ablation) but possibly an oesophagectomy.

Having cancer caused by achalasia is rare, and it may well be that the doctors will concentrate on a procedure to improve that once the cancer issue has been resolved. They will not want to take out your oesophagus unless really necessary.

I am not sure about deliberately putting on weight, but this will depend on your body mass. It is taking in nutrition appropriately that counts.

[Garysreflux]

Hi Alan .. i havent been diagnosed with barrets. At this stage all i know is severe oesoph narrowing .. poss alchalasia. Re. Putting weight on, it was simply my attempt to provide doctors evidence that weight loss was my choosing and not C related. Im now back on my healthy diet .. losing what i put on..

At 6ft 1.5" my aim is to stabillze around 13-13.5 stone eating sensible volume and reasonable amounts of food. At that weight i will feel healthy but look a bit gaunt.

It has occured to me that if we do go IL .. i wont be carrying extra weight at time of op and post op chances are I'll go to skin and bone for a period. Is weight an issue .. does the body survive the op better with fat in store .. may be im putting too much emphasis on weight.

Cheers. G.

Ps people have responded to my posts and im very grateful. Rather than clutter the blog can i send a "Many thanks for that" message direct to the respondent.

[HDMIBENQ]

If you do not have oesophageal cancer I would not recommend the IL procedure without trying every alternative first. Not so much because of the procedure and recovery afterwards but because of long term reflux, once the muscle is removed you will have a massive hernia and will suffer with reflux for the rest of your life. You will also have a reduced capacity for food and will require small but frequent meals. I have had the procedure and I don't regret it but in my case it was a life saving operation. I lost 13kg and am now stable at 57kg, which for my height 170cm is a bit underweight but the worst of it was that I had to buy new clothes. The other problem I have to endure is a constant feeling of motion sickness and dreadful reflux when I lay down to sleep. Even though the bed is elevated I wake up choking 2 or 3 times a night.

[Garysreflux]

Thanks for the helpful reply